In friendship, I’ve hit the De/Fence more times than I can count.
The De/Fence hides in the landscape of friendship, like a camouflage wall
sticking out of the desert sand, blending in until I smack into it face first.

There’s something that happens when new friends are
confronted with disability in a real-life concrete way. In everyday conversations,
they can gasp with outrage at one of the daily stories of exclusion I experience.
They nod their head in agreement, about how unjust it all is.However, when the reality of disability access
inevitably crashes into their idea of fun, the De/Fence has the ability to end
a friendship.

Like when I gently refuse to go to a coffee shop with a new
friend because it’s inaccessible and they don’t quite understand why because I
can “technically walk”. Months later, the Fence appears when I realize that
they haven’t called in a long time and no longer seem interested in hanging
out.

As a teenager, I wasn’t as worried about the De/Fence. Even
into my 20s, there were still a lot of possible people to meet and hang out
with that acknowledged my disability access needs. But, as I’ve gotten older,
good friendships have become rarer, harder to cultivate. People have less time and
energy to devote to friendship. Collisions with the De/Fence have become harder
to shake off and move on.

Hitting the De/Fence is hard to describe. It’s often a slow-motion
crash. I feel myself getting nearer to it when I have that uneasy feeling in my
stomach. An aching churning feeling that I need to bring up some access issue. When
I was younger, I’d try to hold off that feeling and wait to bring up access
issues until I knew for sure that something was really going to mess my body up.
This tactic left me in some bad situations, like sitting on the floor in the
dark at the back of a concert arena, with concertgoers tripping over me,
because I thought there’d be chairs and there weren’t. As I’ve gotten older,
I’ve gotten clearer on my body’s boundaries. While this is helpful to me in
knowing what I need, it also leads me to smack into the De/Fence with new
friends sooner in our relationship than before.

Usually, when I’m making new friends, they can hang when I am
steering the friendship into neutral territory. I suggest a few accessible
restaurants or a poetry reading I know already is accessible. Things get
complicated when what they want to do, means situation where the access is
unknown.

For example, a new friend wants me to go with them on a
last-minute trip. It may only be a couple hours away and they wanted to do ____X___
there. Immediately I’m confronted with several issues. One, I generally need a
big cushion of time before and after doing something like this in order to
prepare my body and to recover. Do I have space in my schedule to do that if I
need to? Two, they usually haven’t researched anything about the access of the
location. I need to know, is ___X____ more of a walking or standing or sitting
event? I need to know if the bathroom is accessible. Friends will patiently try
and answer my questions to about this point. Then we reach the next layer of
access. They want to bring other people in the car, but I need to bring my
scooter. Or they want to stay at another person’s house and so then I also need
to bring a toilet seat heightener and a shower chair. At this point, their patience
begins to unravel at the complexity of what I need in order to function.
Usually in the end, they are giving me their friend’s number (that I’ve never
met) and wanting me to call and ask all the questions myself. “Hello De/Fence.”

The weird thing is, even if I take the time to explain in
detail the access needs I have, even if I call that friend-of-a-friend and have
an in-depth discussion with them about the height of their toilet and where we
will sleep, the De/Fence really isn’t navigated around. For some reason, even
though I’ve explained the need for an accessible bathroom several times,
nondisabled friends especially, continue to forget that something like an
accessible bathroom is something I really
need.

It’s hard to explain the subtlety of disability to a nondisabled
friend. A small event where there is no disability access can leave me
recovering for days, with other people in my life having to help me meet my
basic needs. My nondisabled friend sees it as a one-time injury, not a result
of a lack of access. Even harder is that my body acts different on different
days. This inconsistency means that sometimes the consequences of ignoring my
disability needs are small and other times they are big.

Access is complicated to communicate about. Sometimes I
don’t want to share the details of how my body works. Sometimes the planning
and advocating gets to be too much for me too.

I was talking to another Disabled friend about this. She has
a nonvisible intellectual disability, but jumped in with her own stories and
examples of hitting the Fence with nondisabled friends. For example, she often
needs assistance with reading things like menus or help with basic math, but
when she asks for help, her friends laugh at her. When she confronts them about
them laughing at her, they say that they “forgot”, as if she should take it as
a compliment or something. At jobs she continually has to ask for the same
accommodations again and again and friends there do not back her up or help
remind each other about the access she needs.

It’s not about perfection. It’s about trying. And putting
the responsibility on the Disabled person to demand, advocate for, or figure
out access isn’t really being a friend.

Another Disabled friend I have often “passes.” He
individually negotiates his disability, and has the privilege to do so in many
ways. Yet, I see his frustration level growing with nondisabled friends who
continually don’t understand why he can’t participate in working at the community
organization where they all hang out or who just leave him behind to go to an
event when he’s in pain. He hasn’t learned yet how to believe his access needs
are valid. His friends, all outspoken social justice activists haven’t learned
to believe his access needs are part of what they must consider as part of the
friendship and their activist work.

Sometimes the silence of the De/Fence is the worst. Friends
advertise an inaccessible event they organized but when you point out the lack
of access, they instead just stop checking to see if you’ll go. They post their
pics from the club that you know they decided not to invite you to, cause it’s
“too complicated”.

It’s not expecting the world to be perfect or for friends to
be perfect. Interdependence (working together to get things done) is something
that we as Disabled people often have to teach others in order to have
long-lasting relationships. Disabled or not, we all have to learn how to
discuss mistakes that hurt the other person. We have to learn how to be open to
long, ever deepening conversations about what those mistakes mean and what we
can do.

Interdependence is the tunnel we burrow under the De/Fence.
Friends who are willing to be flexible in both giving and receiving in a
relationship, who understand that sometimes it’s going to take some compromise
and hard work, these are people with whom we are allowed to be our full selves.

Interdependence however, isn’t a skill we can learn in our
head, it is a skill which must be learned in one’s heart. We deserve to have
people in our lives that are willing to open their hearts to us.

As much as I invest in a friendship, I can’t be the one to
hold my friend accountable. The first thing I had to learn about the formidable
De/Fence is that I am not responsible for other people’s growth. As I’ve gotten
older, I’ve gotten clearer about my body’s right to safety. I no longer have
patience with friends who ignore my disability because it’s “too complicated.”

The Disability community has worked hard to reject what
society teaches, that disability access is a personal problem. The Disability
community instead puts forth that Disability is a social and political issue. And
yet, either perspective our friends understand can create a problem in them in considering
what their responsibility to us is. When we think of access as a personal
problem, then it is the Disabled person’s problem to figure access out. When we
view access as a political and social issue, then we view it as “out there”,
something that needs to be addressed by laws or organizations. Disability in
essence is a relationship issue. This is because we are actually unable to live
our lives fully on our own. (We could argue no one can make it on their own,
but Disabled people can’t usually “fake it” as well.)

When I refuse to take on all of the responsibility to figure
out access, I am asking my friends to join in on this social and political
responsibility. This is an asking of everyday, ordinary people to commit to
radical social change. We aren’t used of expecting in our relationships to
create social change. But in reality, this is all that ever does.

So how does this work in real life? It can be
heart-breaking, I won’t lie. Interdependence takes a kind of accountability
that none of us are very practiced in. It takes time, patience and a lot of
mistakes. The hardest thing is that the learning process never ends. Interdependence
is asking friends to commit a level of energy and time to making it happen
whenever you get together.

I’ve tried to find a middle ground with friends who for
whatever reason can’t practice interdependence (and as a result will only be
hangout, superficial friends). Most
friendships are ones where we do one specific activity because it keeps access
simple for them. The few friends who have learned interdependence in their
hearts are the ones I go on adventures with. They are the ones I trust and
invest the most in and try to show up for however I can.

The thing about the De/Fence is that I can’t ignore it’s
there. I have a choice though. I can take it personally, when a friend can’t
burrow beneath it, or I can let my disappointment transform into compassion and
either release them or limit my activities with them.

I’ve started talking to new friends about interdependence.
Mostly they kind of look at me with wide-eyes and say nothing, but at least by
my bringing it up, we both know that it is part of our relationship. I tell
them that I believe in a kind of friendship that can change the world we live
in.

About Me

Naomi Ortiz is a writer, poet and visual artist who cracks apart common beliefs and spills out beauty. As a disabled Mestiza living in the U.S./Mexico borderlands, Naomi supports individuals to build bridges through facilitated discussion, art, poetry and reflection, connecting them to their own truths around self-care and living in multiple worlds. Naomi provides individual consultations and is a nationally known speaker and trainer on self-care for activists, disability justice, and intersectionality. Her upcoming book, "Sustaining Spirit: Self Care for Social Justice" invites and supports readers to explore the relationships between mind, body, spirit, heart and place in order to integrate self-care to survive and thrive. "Sustaining Spirit: Self Care for Social Justice" will be released in 2017.